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Toddler Placed On Highly Restrictive Diet Due To Ultra-Rare Condition That Makes Him Constantly Hungry

Max and Reggie (PA Real Life/Collect)

A devoted mom has revealed how, at just two years old, her son is already on a strict low carb, high protein, no sugar diet because of a genetic condition that makes him constantly hungry.


The minute Kirsty Milbanhac, 38, cuddled newborn Reggie when he arrived into the world in July 2017, she noticed his lack of muscle tone and her mother's instinct told her something was wrong.

But it wasn't until February 2018 that the tot was diagnosed with Prader-Willi Syndrome (PWS), a genetic condition causing a range of learning difficulties and behavioral problems, including an excessive appetite, which has seen him placed on an ultra-restrictive diet at just two years old.

Kirsty, who works for a TV company and lives in Raynes Park, south west London, said: “When Reggie was first diagnosed, I took it relatively well and tried to think positive. But now, it has sunk in a bit more and I am realizing how different life will be for him.

“One of the biggest struggles is restricting his diet. Food can't be seen as a reward – there's no treating him to chocolate or sweets.

“Reggie follows a really strict low carb, high protein, no sugar diet. I wanted to start it now, so he grows up not knowing any different. He's never had things like white bread or pasta, so he doesn't know to miss them."

Kirsty with newborn Reggie (PA Real Life/Collect)

She added: “It's hard to say no when he asks for more food, but we just can't give in, otherwise where does it stop?"

Kirsty, who also has an older boy, Max, four, with her construction manager husband Jimmy, 36, enjoyed a textbook pregnancy with Reggie until about two weeks before her due date, when medics noticed her bump growth had slowed and booked her in for a precautionary scan.

When the results showed her unborn child was far smaller than expected, it was feared her placenta was not working properly, leading doctors to recommend she be induced.

Max and Reggie (PA Real Life/Collect)

“I'd had a small bump with Max, too, and he was perfectly healthy, so I figured I just carried small babies," she said.

“I couldn't deal with it all at first. I thought it was a fairly routine appointment, then suddenly I was being told I'd need to have my baby as soon as possible.

“I went home that night, which was a Friday, to digest it all, then admitted myself to be induced on the Monday once I had processed everything."

Kirsty, Jimmy, Max and Reggie (PA Real Life/Collect)

Kirsty was induced as planned at south west London's Kingston Hospital, but labor progressed slowly and Reggie was not born until four days later, on July 6, weighing 4lb 10oz.

She continued: “I hate this word, but I could see right away that things weren't normal. Where Reggie had no muscle tone, he was really floppy.

“He was also really struggling to latch on and feed."

Reggie when he was first born (PA Real Life/Collect)

When his blood sugar levels began to drop the next morning, Reggie was taken to the neonatal unit, where he remained for two weeks, as doctors battled to find what was causing his symptoms – running tests including an MRI scan, when he was only days old.

“When I was told Reggie was being kept in hospital, I just broke down," recalled Kirsty. “To have no idea what's wrong with your child is just terrifying."

Eventually, the baby was allowed home, but with tests failing to discover what was wrong, doctors were still unable to give a diagnosis.

For months, he was seen by various different specialists, who tested for everything from cerebral palsy to spinal muscular atrophy, a muscle weakening condition, the most severe form of which is rarely survivable beyond a few years.

“I was basically planning my son's funeral in my head," said Kirsty. “I was terrified doctors would tell us he had something that meant he only had a few years with us.

“While all this was going on, he was still so floppy he could barely move. All he did was sleep and he made no noise. We'd be in hospital in the premature baby unit waiting for appointments, surrounded by crying, screaming babies – but he'd just be silent."

Reggie when he was first born (PA Real Life/Collect)

With Reggie's muscle tone so weak that he could scarcely even muster the strength to cough, he was admitted to hospital a few times after common colds developed into dangerous infections.

On one occasion, he even wound up on a ventilator – though thankfully pulled through.

Then, during one hospital visit in early 2018, a doctor mentioned PWS in passing, asking Kirsty if Reggie had been tested for it.

Reggie when he was first born (PA Real Life/Collect)

“At that point, I wasn't sure what he had and hadn't been tested for," she said. “It's difficult when you don't know what it is that consultants are looking for.

“We were due to see the genetics team a couple of weeks later and they mentioned the condition too, and said they were going to dig a little deeper with tests."

Finally, in February 2018, Reggie was officially diagnosed with PWS.

Reggie (PA Real Life/Collect)

According to the Foundation for Prader-Willi Research, the condition occurs either when part of chromosome 15 is missing or deleted, as a result of a mutation, or when, like Reggie, an individual inherits two chromosome 15s from their mother and none from their father.

Speaking of the diagnosis, Kirsty said: “On one hand, it was a relief to finally know what was happening – particularly as we'd been given much bleaker possibilities before.

“I had time to properly research and get my head round it, so it wasn't this huge bombshell, like if he'd been born, then we got the news a few days later."

Max and Reggie (PA Real Life/Collect)

She added: “In time though, I began to think more and more about how life will be different for him."

Now, Reggie's day-to-day life is all about adapting to the typical symptoms of PWS, like floppiness caused by weak muscles, which can see him tire easily and means that he cannot yet walk.

As a result, he has regular physiotherapy to build his strength up.

In addition, his speech is delayed, and Kirsty has started seeing hints of behavioral problems that can be symptomatic of the condition, according to the NHS.

She explained: “We aren't quite in the thick of it yet, as Reggie is still so young, but he has these meltdowns that seem to go beyond normal toddler tantrums.

“The only thing we can do is let him calm down. However, I can't be sure yet if it's related to the PWS."

Reggie having physiotherapy (PA Real Life/Collect)

Kirsty continued: “Every PWS patient is different and there may be certain symptoms that suddenly hit as Reggie grows older. I know the disparity between where he is developmentally and where other children his age are may increase as he gets older too.

“It really is just a case of wait and see right now."

As well as working tirelessly to ensure Reggie sticks to his diet without feeling deprived – especially as he cannot have the same treats as his big brother – Kirsty must also navigate some of the more unusual symptoms of PWS, like struggling to maintain a regular temperature and being less sensitive to pain.

Reggie having physiotherapy (PA Real Life/Collect)

She continued: “I've had to get my head around a lot of information about nutrition. People aren't always aware of what's in their food, but that isn't an option for us.

“Reggie, who is also on growth hormone treatment as PWS affects his stature, basically follows the healthiest diet you can imagine. I don't want him to feel like he never gets treats, so I try to get around it by giving him alternatives, like avocado ice lollies that have no sugar in.

“His temperature can be tricky, as his body can't naturally heat or cool itself as well as other people's. His lips go blue very quickly when he's cold. As with many children with PWS, he can't feel pain that well either. On one hand, that meant teething was a breeze – but I do worry about the dangers, as he might not feel it if he really hurts himself."

Reggie (PA Real Life/Collect)

Although adapting to daily life can be challenging, Kirsty, who has found connecting to other PWS families through Facebook groups an invaluable support, is determined to remain positive and give her boy the best life possible.

Recently, a friend set up a GoFundMe page for her to help gather money for Reggie to go on a bespoke three-week course, where he will have access to specialists – as well as the opportunity to meet children just like him – who will help him edge closer to being able to walk independently.

Happily, the money, totaling £3,500 (~$4,250), was soon raised, and now any excess funds gathered by the page are to be split between the Foundation for Prader-Willi Research and the charity Prader-Willi Syndrome UK.

Max and Reggie (PA Real Life/Collect)

Kirsty said: “We'd love the extra money raised by GoFundMe to go towards research – and maybe even one day, finding a cure.

“When you look at how far medical breakthroughs come all the time, you have to wonder where we'll be in five or 10 years from now.

“A cure may not be that close but, hopefully, more research will at least help manage aspects of Reggie's condition, like the behavioral issues and overeating."

Reggie (PA Real Life/Collect)

She concluded: “It is difficult as his mum knowing that, right now, an independent life will be difficult for him.

“He will require constant care and, as a free-spirited parent who has always travelled and wanted that for my children, that was a hard hurdle to get over.

“But this is the only life Reggie has ever known, so I am determined to make it as happy as possible."

To donate, visit www.gofundme.com/sky-diving-for-reggie

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When you know your kids backwards and forwards, this is the best tool in your arsenal.

Getting our kids to listen to us is not always the easiest of tasks. They're willful and stubborn, but we've got a mighty weapon they are rarely prepared for: reverse psychology. Getting them to convince themselves to want to do something against their own initial intentions takes some work and a whole lot of creativity, but a little sneaky manipulation goes a long way. Here are some clever parents' tricks that are definitely worth taking notes on.

Redditor u/LeanderD Asks:

Parents of reddit, what's your best example of reversed psychology on your kids that actually worked?

He Floated His Idea Through A Back Channel

Giphy

Wanted to name my boat. Anything I would think of was dismissed as stupid by my 13 year old son. After deciding on a name, I confided to a male friend my son liked. Made my friend suggest the name as though it was his idea. My son thought the name was perfect. Done.

calypsodweller

We Always Want What We Can't Have

One of my best friends through childhood used to be punished with no salad if she misbehaved. She cherishes salad now and would always try to eat as much as possible during school lunch. Coincidentally, her now husband used to be punished with no books, it had the same effect. I think it's hilarious that they'd be hitting the salad bar and library like some black market their narc parents couldn't reach hahaha.

cookiearthquake

A Deceit That's A Cut Above The Rest

Giphy

Don't know if this counts, but, at my high school (private, boys only) in the 1960's, they made a big deal about how long your hair was, and would occasionally order a boy to go home and "get a haircut".

I thought it was stupid, until years later, a master confided to me at a reunion that the policy was deliberate. The school figured we'd spend so much energy rebelling about hair length, that we would ignore other aspects of teenage rebellion. (Not?) Surprisingly, they were mostly right.

FrankDrakman

Damn! That's smart. Wow.

fangxx456

Oh they don't like long hair?

I'll show them. I'll grow my hair out as lon- what?! No I don't want to go "party"? I gotta try out this horse shampoo.

DankeyKang11

The Forbidden Book

Hi I was a victim,

There was a forbidden book that I was not allow to read on the shelf. My parents said I could only read it if I behave myself.

It was summer holidays and I was playing games all day (after 6 hrs of summer homework). One day I was home alone and had the opportunity to grabbed it. I read like half of it in one go. It was 5000 years of Chinese history.

Safe to say I was bamboozled.

oddstodd

Flowers Of The Queen

My parents always told me my broccoli were the flowers of the queen and that I really shouldn't eat them, or else the queen would get very upset! I, of course, ate the whole broccoli in a few seconds.

Subwoofy

I'm telling the queen and she's gonna be pissed

draculacletus

Sleeping Beauty

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I taught my kids when they were toddlers that no amount of yelling, shaking or hitting can wake a sleeping adult. The only thing that works is a gentle hug and/or a nice kiss on the cheek.

Edit: Probably needed some more details for the reverse psychology aspect to be clear. It went something like this - Step one, tell the kids I'm going to sleep and nothing they do will wake me (head buried face down is the safest position). Step two, after the initial onslaught dies down pretend to awaken on your own. Tell them you got a bit of nap left in you and nothing can wake you, especially not hugs and kisses.

DrMethusael

Holy sh*t...if my daughter woke me up like this I would buy her a pony.

All-Seeing_Elon

I am saving this comment because this will save lives if I ever have kids, stg.

smerter

A Walk In Someone Else's Shoes.

Split custody with my ex. When my son was around 10, he visited two weekends a month. I was waiting tables and didn't have a huge amount to spend, but he was so needy from divorce (and I'm not blaming him, it was ugly), he begged constantly for MORE when he was with me. Whatever more was, it didn't matter... he'd be eating ice cream cone and begging for teriyaki.

I finally realized that he just felt empty, and getting MORE whatever from me wasn't filling him up. His next visit I handed him $100 in cash and told him it was our food/fun budget for 3 days and two nights, and he was in charge of it. I bought him his own wallet to carry. We figured out how many times we were going to eat and what we were going to do, and he paid. He got to keep whatever money he had left...thought he was rich...then realized just how much everything cost. Well. Shoe on other foot then. If we had no money for food, we ate leftovers - and I didn't contribute more to pot. After a few weekends of running short or not getting something he actually wanted because he was foolish with funds, he started to really think about how to spend that money. He budgeted and kept to his budget. And a few times he actually went home with a little cash for his private stash.

Many years later, he thanked me for this. It really changed the way he thought about money and love.

Augumenti

This Is Worth Giving A Shot

Took my 3 year old son to one of those doctor's visits where he was going to get a shot. He was worried about the shot on the whole drive over, almost to the point of tears. We get to the doctor's office and a nurse subtly lets me know that my son is not just scheduled for 1 shot, but 5 of them in the same visit.

I turn to my son with an exaggerated smile and tell him, "Good news! They figured out how to take that one big shot you were going to get and instead break it up into these 5 little tiny shots so it won't hurt nearly as much!"

You could see the relief wash over his face. He stopped squirming and relaxed completely. He took the first shot and even smiled and said "It's true! The small ones don't hurt!"

We actually made it through the third shot before the effect wore off and reality kicked in. Still... I counted it as a victory.

blackbird77

Put This To The Taste

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My mom would tell me she only lets me eat soup after candy and she'd only buy me candy that i didn't like. After a few times, i stopped trying and begged her to let me eat soup first. She gave me a smirk and told me go ahead. This doesn't sound as evil as it was. But trust me i suffered.

turkeypr0

So what was the candy?

Poster_Main

Mint chocolate, raisins, stuff like that. I still hate them to this day. Who the f--- thought while eating chocolate "hmm id like some tooth paste with this."

turkeypr0

This is Truckin' Awesome

Mum had sworn a bit around the house.

When 4, while out at the supermarket, I said F word really loudly.

Very quickly and intently, she asked if I had just said "Truck" and said that was a bad word and not to ever say Truck like that again.

I thought that was the bad word so used that when being naughty.

GodOfTheThunder

The "Silly Mom" Routine

The "Silly Mom" routine.

My kid, and a few other kids I've known, would balk at getting ready to go. I'd grab their clothes and say, "Well, if you won't put on your clothes, I guess I'll put on your clothes. Cute shirt, by the way! Does it go on my foot?"

NO!

"Does it go on my head?"

NO! IT GOES ON ME!

"Oh, that's right, thanks! So, it must go on your legs, right?"

NO!

"I just can't figure this out! Where does this adorable shirt go?"

[kid grabs shirt and puts it on] ON MY TUMMY! SILLY MOM!

"Oh, thank you so much! Now what about these pants? Shirts go on tummies, so...the pants go on the tummy, too, right?"

NO!

[continue until kids have dressed themselves]

I would also do things like hand the kid my keys and say, "Alright, you're driving, I'll sit in the booster seat in back," attempt to feed the kid by putting a spoon up to his ear or his belly button, and attempt to put away his toys in the refrigerator.

insertcaffeine

Some Foot For Thought.

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My mum would always yell at us "if you don't do X, you have to go to bed without socks!"

I never wore socks anyway, and I'm ashamed to admit that this worked.

Splittsky

That would work really well on my son, or make him cry for a really long time... He's 3 and over the last few weeks has decided that he is fully unable to sleep without socks on.

PJQueen

Toddlers man. Completely unpredictable.

SheaRVA

I'm Greens With Envy

My mum had a friend that would put vegetables on her own plate and not the kids.

When the kids asked she would be reluctant to share, "that's grown up food. But I suppose I can let you have a little."

Her kids grew up loving vegetables.

I sat at the dinner table for 3 hours staring at the yucky cauliflower I refused to eat.

laik72

This reminds me of an instance when my child convinced my wife and myself to change our plans for dinner. We were in a grocery store to pick up something quick and easy to eat that we wouldn't have to prepare. Our daughter, wanted none of that, she demanded that she wanted a salad from the salad bar. We started to argue back, but then realized: "Our child demands that we feed her vegetables for dinner instead of a microwaved meal, why are we saying 'No?'"

We had salad for dinner that night.

Galaxy_Ranger_Bob

The Power Of Choice

I don't so much know if you would call it reverse psychology, but I didn't realize it until my dad told me this.

When there were chores that needed doing, he noticed if he asked me to mow the lawn, I would complain and procrastinate. But if he asked would I rather mow the lawn or wash the windows, I'd pick one and just get it done.

Shattered my brain when he told me when I was in my twenties. I use it when I'm coaching or baby sitting all the time and it almost never fails.

AppealToReason16

The Boy Who Cried 'Ouch'

Giphy

I've done this one with tens of kids. Any time a kid gets "hurt" (falls down on grass, gets gently hit in the face with a ball, etc.) instead of stopping the activity to pick the kid up and see if they're ok you just scoot them off to the side and resume. Within 10 seconds of not getting all the attention and seeing the fun is resuming they pop right back up and are magically healed.

This of course is only for the "injuries" that aren't actually injuries.

pedanticProgramer

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